The moment I found out about my son’s autism

Tom pre-diagnosis, twirling flowers in his hands: we had no idea this repetitive play was a symptom of autism

I expect that for all parents of children with autism, there is a point at which you realise that life has changed, and it is never going to change back again. This is when you finally recognise that you are going to have to learn about something you do not understand, and you are also going to learn to live with it and love it, because that something is autism and (you now know) it is part of your child, and your family and so, indirectly, of you too…

At first, let’s face it, this is a shock. Acceptance, maybe a degree of illumination, comes later. But at that moment of recognition – this is no longer something remote that happens to other people, it is real and it has happened to you and will carry on happening – it is as if a fog has suddenly descended, and you can see no way out.

Because all you know is what everybody else knows – Rain Man, The Curious Incident of the Dog in the Night-Time – and it seems that what you’ve just been given is Bad News, although at the same time life carries on from where you left off and, perhaps, what you’ve just been told makes sense of some hitherto unacknowledged aspects of what life was like before.

Here’s how I found out.

The warning rash

It started with a rash – a non-fading rash, the type you are told, as a parent, to be vigilant about and test with a glass pressed to the skin (if the spots fade, it is not ominous), the potential warning sign of meningitis.

My son Tom, three and a half years old, was ill, with a temperature, lying on the sofa at home. He was clearly unwell, but I thought it was one of those sudden fevers that young children get, that often pass as quickly as they came.

However, he wasn’t really capable of telling us clearly how he was feeling – his ability to express himself freely was very limited. He understood much more than he could say – we had learned to communicate with him by asking him questions he could answer ‘yes’ or ‘no’ to. He sometimes echoed other people’s speech, which could give the deceptive impression that his command of language was greater than it really was.

That day, there was no obvious sign that whatever he’d come down with was anything out of the ordinary… until I saw the rash. I only noticed it because I had taken his t-shirt off to help him stay cool. It was just three spots, which didn’t look too bad, but they didn’t fade. I knew at that point I needed to get him checked out, and quickly.

At paediatric A&E, the medics initially seemed fairly relaxed and hopeful that it would turn out to be nothing too serious; after all, Tom didn’t appear to be seriously ill. He was off his food and drink – not a good sign – but he certainly didn’t seem to be in pain.

The mood changed as soon as his blood test results came back. These indicated that he was fighting a very serious infection. The medics seemed slightly bemused by how a child who appeared to be nothing more than a bit under par could actually be in such a bad way.

The next day he was diagnosed as having a ruptured appendix. That was what had caused the rash – the infection had spread into his bloodstream. Once the cause of his illness had been established, he was booked in for surgery straight away. This was the NHS at its best – dealing with an emergency, saving a life.

It was the last op of the day, and it took a long time because they had to clean out Tom’s insides. My other half was back home, looking after our daughter; I sat by myself in an otherwise empty waiting room, reading Victoria Beckham’s autobiography, unable to do anything other than pass the time. Sometimes a book is exactly what you need, and at that point, that particular book was an effective distraction. I have retained a special soft spot for Posh Spice ever since.

When it was all done I saw Tom and met the surgeon. He looked shattered; I thought of the intense concentration it must have taken, to ensure that every last trace of infection was removed. And I was profoundly grateful, and relieved that it was all over.

Questions and answers

But then, a few days later, a paediatrician drew me aside. He said the nurses had made some observations about my Tom’s behaviour while he was on the ward recovering from the operation; did I have any concerns about it?

Certainly, we were worried about Tom’s delayed language development, and had already had some communication about this with health professionals, but I wasn’t quite sure what the doctor was getting at. Talking was clearly a problem, but on the whole, Tom was a placid, even passive child – so why the question about behaviour?

We were outside in the garden area; Tom was much better by this point, freed of the various tubes and wires he’d been attached to post-op, and was playing on a bike. It was reassuring to see him like that, the doctor said. I was offered an out-patient developmental assessment, which I gratefully agreed to. But still, something niggled… I knew there was a further question I had to ask.

It wasn’t until Tom was being discharged that I got up the nerve to ask about what exactly the nurses had observed. Repetitive behaviour, I was told: twiddling small objects in his hands. Oh yes, I said. He does that all the time. What could that mean, then?

The doctor said carefully, It could suggest an autism spectrum disorder.

And then I went home in a cab with Tom – my other half was taking our daughter to her swimming lesson. The weather was awful; it had been tipping it down. They were excited to notice a couple of rainbows, but I felt that I had been plunged into a world of black and white.

That evening I googled autism. And that was how I found out.

It made sense. It made me sad to read the statistics – the prospects for employment, the prevalence of bullying, and so on. And it still does. But over time, the sense of gloom I felt that night has receded. I think it was probably shock as much as anything. And fear: fear of the future. Fear of the unknown. Fear of other people, too, and what they might do.

I won’t say those fears were all groundless, but there was also so much to hope for and be grateful for: so many blessings to count. I’ve come to realise, since then, that the calmer and happier and more loving I can be, the better things tend to go. I know that sounds really obvious, but it’s harder in practice than in theory!

And so here we all are, with our much-loved boy, as lucky as anything. We’ve been helped along the way by some great people – not least the staff at Tom’s excellent school – and some brilliant charities:

Ambitious about Autism, which supports children and young people with autism and their families. In a few days’ time I’ll be taking part in a Thames river swim organised by a friend to raise funds for Ambitious about Autism – here’s our JustGiving page. I’ll let you know how we get on!

The National Autistic Society – I recently did an EarlyBird course with the National Autistic Society – this brings together parents and carers with staff from the child’s school to learn about autism and strategies that can help to give children the best possible chance to thrive.

I discovered the websites of both Ambitious about Autism and The National Autistic Society on that first evening when I started to try to find out about autism – they do a great job of raising awareness and providing information and support. Here are some more charities that have given us invaluable help:

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22 comments

cam i ask?was he emotionally distant? my son always has to have a tiny toy, is obsessive about doors being closed, and other things and his speech is delayed but he’s very emotionally present. Does one exclude the other?

The very last thing I would want to do is cause anybody unnecessary worry! The normal developmental range for children is very broad. If you’re concerned about the language delay, or indeed about development in general, though, do check it out – perhaps raise it with your GP? Autism is an incredibly wide-ranging condition and as they say, if you know one person with autism, you know one person with autism. Tom is very affectionate and loving with the people he knows best – his parents and sister – which is a huge strength.
On language development, btw, I’d like to recommend a book co-written by Nicola Lathey, a brilliant speech therapist who has worked with Tom – it’s called Small Talk and has lots of tips on how to support your child http://www.amazon.co.uk/Small-Talk-Simple-language-development/dp/0230766439

It’s tricky to judge really as he has three languages and was tongue tied till 2 and a Half which meant he couldn’t speak.
I will keep an eye in things. At the moment it’s the sheer obsession with attachment toys and closing doors drawers etc that has me concerned.

Don’t forget there are many people supporting you! I have a autistic sister and recently I started a blog to talk about our life and build awareness of autism. Then I realized there are many people supporting me and can relate to how it feel. I am sorry to hear about your son but remember that it is a start of new journey of your life. This may be very difficult sometimes especially because of judgement of people. But I can tell you that the happiness you will get from your son is just priceless. That was how I felt with my sister. Well, amazing adventure is waiting for you outside! Enjoy and good luck with your journey! 🙂

Thank you! It’s lovely to hear about you and your sister. My son and daughter have a really strong bond – maybe one day she will write about him – she doesn’t just yet though (she is nine, nearly ten!)

That is great to hear that your son and daughter have strong bond together! I wish I could be there for her if she needs someone to talk to her about things that she might face just because her brother is autistic because I had to face those by myself.. and I think it would have been nicer if I had someone other than family 🙂

Alison, as Inclusion Lead in my school, children on the autistic spectrum are part of my working life. I find this ‘disorder’ (sorry, hate that word) fascinating and now realise my late half sister was on this spectrum (although not diagnosed in her day). She was successful in her own world and I did see her handle social situations quite well later in life (but she did have to push herself). You note books/movies in your post, have you read The Rosie Project by Graeme Simsion? I thought this a brilliant fictional read.

The most successful children I have worked with have been those with mothers who know their children really well and strong communication between school/home.

Thank you so much for your response! And thanks for recommending The Rosie Project – it sounds like a great read, I haven’t read it but will now.
I have come across professionals who work closely with children with autism who are fascinated by them and by autism, exactly as you describe. It’s interesting to hear about your late half sister – it’s good to hear about her success and that she came to cope increasingly well with social situations. It reminds me of something Temple Grandin said, that over recent years her delivery of speeches has improved and people comment on how her intonation sounds more natural. I guess all of us are capable of continuing to learn as life goes on.

I moment I instinctually knew, was when my son was, perhaps, eighteen months old. I called his name from a short distance. He didn’t respond. I walked over to him and knelt down, facing him. I looked into his eyes and repeated his name softly. Although our eyes were on a parallel plane, he didn’t look back. A year and a half later, he was formerly diagnosed. The rest, is continual history.

Thank you for sharing this. My sweet 5 year old son has ASD and his first school report says ‘he is a very thoughtful and caring little boy who treats people very gently’. ASD is as different as we are from each other. He adores his two younger brothers but finds noise very troublesome which makes life interesting! I remember feeling both heartbreak and relief when he was diagnosed about 15 months ago.

Thanks so much for this post, Alison – I really appreciated reading it. Our older son has just had an Ed Psych observation which suggested that he has autistic traits (more formal assessment to come) so I’m reading everything I can on the subject at the moment. Your words came at just the right time and were inspirational and encouraging to me – thank you. Wonderful to learn about all the blessings your son brings to your life! I’ll look forward to reading the rest of your blog. Enjoy the sunshine! x

Very pleased to hear your young man recovered from the infection, etc. My favourite autism charity is http://www.treatingautism.co.uk….. A charity run wholly by parents of children with autism, check it out they do some amazing work….

“I won’t say those fears were all groundless, but there was also so much to hope for and be grateful for….” Exactly. My pivotal moment did not come with the diagnosis, but happened one year ago when I realized that our school system would no longer work for my son. The bullying and social issues, along with a school of 1200 kids and constant transitions throughout the day was just more than he could handle, even with some support. He was becoming an angry, despondent, hopeless child.

In utter desperation, I decided to just take him out of the public school system. I was terrified and knew nothing about homeschooling, but we eventually found lots of support, smaller outside classes, interest-based social groups, field trips, etc. This isn’t the solution for everyone, but it is for him. He’s doing fantastic. I wasn’t sure what his future would hold, but now I feel almost anything is possible.

I’m also a writer and am now working on a nonfiction book about my son’s journey. It’s been so difficult writing about and reliving his early years, but so rewarding to see how far we’ve come. He still has challenges, of course, but he’s happy and learning and has real friends now. That’s all I ever wanted. I wish you all the best in your own journey.

Hi. I happen to work at a big university (36,000 students) in Texas, and the univ is very good at being inclusive for everyone, including those with autism. In fact, there is a special center for college students with ASD and that center runs a lunch-time cafe for its students to learn working skills in a supportive environment. It’s one of my fav places to eat.

If you’re interested in the center and the research it does, the web link is here: https://www.depts.ttu.edu/burkhartcenter/. They seem to have a good resources page (U.S. focused, but it may have some new info for you that might be useful).

All that to say that there are students with ASD who are not doomed to a life of special care or never working. I hope that your son turns into one of these folks!

Thank you! Interesting to hear about where you work – and thank you for your good wishes. My son is now 11, and has just started secondary school, where he has a place in a specialist unit based in a mainstream school. He’s surprised me at each stage with what he’s been able to do: he can read, write, do buttons… Recently sat through, followed and enjoyed a whole film at the cinema, at a screening for the general public rather than a specifically autism-friendly screening (it was the Christopher Robin film – he is into Winnie the Pooh.) Currently his favourite lesson is tech and he also enjoys gardening club. I very much hope, as you say, he will be able to find some kind of occupation as an adult that he will find satisfying, whatever it might be.

‘Acceptance is key but it is hard’ – pretty much sums it up. (And it’s not just your own acceptance – there’s also the issue of how everyone else around you responds, and how your child feels, though we still don’t really know how aware Tom is of being different – as his language skills develop, he seems to be moving closer to being able to tell us.) Sending lots of good wishes to you and your family. xx